Amplifying patient voices amid pandemic: Perspectives on tracheostomy care, communication, and connection

摘要

? 2021Objective: To investigate perspectives of patients, family members, caregivers (PFC), and healthcare professionals (HCP) on tracheostomy care during the COVID-19 pandemic. Methods: The cross-sectional survey investigating barriers and facilitators to tracheostomy care was collaboratively developed by patients, family members, nurses, speech-language pathologists, respiratory care practitioners, physicians, and surgeons. The survey was distributed to the Global Tracheostomy Collaborative's learning community, and responses were analyzed. Results: Survey respondents (n = 191) from 17 countries included individuals with a tracheostomy (85 45 ), families/caregivers (43 22 ), and diverse HCP (63 33.0 ). Overall, 94 of respondents reported concern that patients with tracheostomy were at increased risk of critical illness from SARS-CoV-2 infection and COVID-19; 93 reported fear or anxiety. With respect to prioritization of care, 38 of PFC versus 16 of HCP reported concern that patients with tracheostomies might not be valued or prioritized (p = 0.002). Respondents also differed in fear of contracting COVID-19 (69 PFC vs. 49 HCP group, p = 0.009); concern for hospitalization (55.5 PFC vs. 27 HCP, p < 0.001); access to medical personnel (34 PFC vs. 14 HCP, p = 0.005); and concern about canceled appointments (62 PFC vs. 41 HCP, p = 0.01). Respondents from both groups reported severe stress and fatigue, sleep deprivation, lack of breaks, and lack of support (70 PFC vs. 65 HCP, p = 0.54). Virtual telecare seldom met perceived needs. Conclusion: PFC with a tracheostomy perceived most risks more acutely than HCP in this global sample. Broad stakeholder engagement is necessary to achieve creative, patient-driven solutions to maintain connection, communication, and access for patients with a tracheostomy.